Insurance and the common good

I had been working for my current employer for five years, happily paying for my portion of my insurance costs while lucky enough to not need more than a yearly exam, when I became suddenly ill. Out of nowhere I was diagnosed with an unpredictable chronic illness that I had done nothing to cause.

About five years later I was standing in my parents’ kitchen, not long after the two surgeries that had finally gotten me into remission after countless tests, expensive medications and frequent trips to the doctor. I had significant out-of-pocket expenses, but paid nothing like the numbers that appeared on the bills. I asked my mother “can you imagine what would have happened if I hadn’t had insurance?” I asked, thinking about financial catastrophe.

“You might have died.”

I’ll be honest, that hadn’t occurred to me.

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Part of the problem with our health care debate is that we are trying to talk about a million things at once. Regulations, the exchanges, individual mandate, the insurance industry, Medicare, Medicaid, the opioid epidemic, big Pharma…there’s a lot mixed into the Affordable Care Act and our discussions surrounding it. I don’t care to remark on all of these things, but there is one area that I have been pondering the last few weeks: I think we have moved the line on how much responsibility we have toward each other.

Insurance works if we all work together to subsidize those who are unlucky enough to need to file claims. By requiring insurance coverage for all Americans we spread more of the cost burdens around (I write this knowing that the individual marketplace needs serious work in order to keep from inordinately burdening those without employer-sponsored insurance). By including essential health benefits in all policies it not only ensures that people won’t find their health needs not covered by insurance, but that everyone is paying in to cover these services for others.

Part of the conversation we are having now is whether or not health insurance and care are important enough to our society that the government should ensure that we are all supporting each other. My comfort with that idea reveals my bleeding-heart nature, though I’m aware that the ACA is not a perfect way to accomplish this. I would say it also reveals my financial comfort, but I felt the same way when my financial situation was more precarious.

A whole swath of the country thinks regulation on insurance policies is an impingement on their freedom, and that freedom in the health care marketplace better serves the common good than the government’s efforts to ensure affordable access to health care for all. (I think there is also a fringe that doesn’t believe in the common good, but I’m trying to be charitable.) In an extraordinarily individualistic culture I think it is a triumph that we are even having the conversation.

As much as I want to give young people an IT COULD HAPPEN TO YOU!!! lecture about the need for insurance, I agree that it is paternalistic to use “you don’t know any better” as the reason to require the healthy to purchase a policy. I think we are closer to a day when we pay into these programs in one way or another,with minimal controversy or conflict, because as a society we have agreed that this is a way we can help take care of each other.

Health in general and the Affordable Care Act in particular are endlessly complicated, and they deserve attention and discussion. As I follow the repeal efforts, I look through the lens of the common good, and think more other people do than ever before. We don’t all agree not the best way to go about it, but at least we are trying to look out for each other.

What are your thoughts on the Affordable Care Act and its basic premise? (Civil comments please!)

I would not be insured without the ACA. If it is repealed, I will not have insurance. If I don’t have insurance, I will have to choose between making the work I feel called to make–being an artist, teaching children, putting in the incredibly long, hard hours to grow my company into something lasting and sustainable–and taking a job I don’t want, don’t feel called to do, don’t feel would be a good use of my talents, probably won’t do as well as I do my current work, that doesn’t serve the people and communities I have been a part of and have been caring for for the last five years, all so I can have insurance. We can have conversations all day about the under-compensation of artists, but in the short term, that’s the barrel I’m staring down. It is not an exaggeration to say that whether or not my life is worth living hangs in the balance. The ACA enables me to pursue my own “American dream.”

If you study the history of how we got to the crazy “health insurance” and “employer-based health insurance” model, it’s totally bananas and NO ONE ELSE does it this way. Insurance companies only make money when they deny you care, and I have NEVER been able to rest easy in our current model because I know too many people who have lost their battle with whatever while fighting hard to try to get the care/tests/diagnostics/procedure/medication they needed. It’s heartbreaking. I can name names with respect to REAL PEOPLE I KNOW who have LITERALLY DIED from getting hung up the web of red-tape created by the insurance model. The ACA is very broken, I do not love it, it is a burden to the self-employed (e.g., my boss)…

…but the medicaid expansion is literally the one thing that is my lifeline.

Without access to care granted to me (and those like me) via the ACA, I would have no hope for access to care, services, and medication that sustain me through a chronic condition I did nothing to create nor deserve. Traumatic events related to the addiction and abuse of others — events I did not create, I did not deserve, over which I had no control (children never do) — have left me alive, but DEEPLY psychologically scarred in ways that are both irreparable AND treatable. Knowing my life LITERALLY hangs in the balance with respect to access to medication that keeps the depression, various anxiety disorders, and PTSD controlled enough to be tolerably managed??? That’s a scary place to be, knowing that my own life hangs on the razor’s edge of someone’s budgetary chopping block. Everyone of my family and so many of my friends are completely uninsurable in the individual market due to chronic serious medical conditions.

The ACA has — very literally — meant the difference between life and death for us.

I’m glad the latest (very scary) round of political dumbassery is over, but that does not mean I will rest easy. I am the defacto “only child” with a chronic pre-existing condition that makes me uninsurable…with two parents who are aging, disabled, and battling chronic conditions of their own.

A single-payor healthcare system with access for all (and probably along the lines of the Kaiser model) is the only thing that will allow me to rest. Recognition that access to affordable healthcare for EVERYONE is a basic human right that cannot — and will not — be taken away is the only thing that will give me rest.

The ACA is a bit of a Rube Goldberg machine, but that represents the difficulty, going back to the 70s of getting *anything* more passed when it comes to healthcare. Heck, Medicaid and Medicare, the healthcare landmarks of the 60s remain under constant attack. Attempts to expand them in the past have largely failed. So our adoption of the ACA represented more our failure to do anything better. It was a way to move the bar forward toward more universal coverage, even if incompletely and with a ton of unnecessary complexity. And even so, it was attacked unrelentingly and opposition to it became a tribal marker — until it went fully into effect and people actually began benefiting from it.

I have employer provided insurance. And since my employer is the largest single employer in the United States, it’s pretty decent insurance. Without it, would I have received the care I did last month in time to save my life? It’s hard to say. My only major presenting symptom was a fever the week before that wouldn’t go away. (As the ER doctor called it, a fever of unknown origin, since it had no apparent cause.) I had gone to my primary care doctor during the week. He couldn’t find anything, decided it was likely viral and told me to come back if it didn’t go away. I decided to go to a free-standing ER the following weekend because it wasn’t going away and I wasn’t feeling right. If I had not had insurance, I probably wouldn’t have made that trip. As it turns out, I had a twisted colon (sigmoidal volvulus) that had apparently developed slowly over time so it had not been severely painful. After finding it in a CT scan, the ER doctor admitted me to a hospital and sent me directly there. They did a scope to temporarily untwist it followed a few days later by surgery to remove 2 feet of colon (15 cm in diameter) and reconnect it. I spent 10 days in the hospital total and am still recovering. Had I not gone to the ER, it probably would have ruptured and I likely would have died.

The moral is that it’s not just access to care itself, it’s the entire decision-making process that’s impacted when you have no insurance. (I’ve been working poor with no health insurance a long time ago.) And that can easily be a life or death process in and of itself, but one you can’t even recognize as such until after the fact.

Our younger son turns 26 next year. He has celiac disease too. We’ve been ensuring that he has everything thoroughly checked this year. He had a sleep study because he was exhausted all the time and not sleeping well. He was diagnosed with sleep apnea, but that doctor also sent him to an ENT to have his tonsils checked. Turns out they were horrible (and likely making sleep apnea worse) so he had a tonsillectomy. That was really hard on him for a week given his age and their size. Thyroid and other automimmune issues besides celiac are also common in our family, so we’re having those checked for him as well, especially since thyroid can also contribute to tiredness. And we’re doing all that with some urgency to make sure that anything major is found and covered while he’s still covered under my insurance. Thanks for that one ACA! Still, it’s pretty ridiculous that we have to deal with issues like that in this country.

So yes, even with the ACA, our healthcare system remains a hodge podge at best. But the ACA improves the situation dramatically over what existed before. It’s a major step in the right direction. Even so, most of the calls for “single payer” are way too simplistic. Sure, that’s one option used both in the US (Medicare and Medicaid) and in some countries. Canada has a “single payer” in each province. France uses a hybrid single payer/private insurance model, I believe. Our VA functions more like directly provided care similar to Britain’s NHS. With the VA, we do that for a number of reasons, but one of them is that the medical issues that veterans, especially war veterans have tend to require more specialized care than can easily be found in civilian practice. The VA is intended to fill that gap. (It’s been drastically underfunded to meet that need, especially as we’ve continued to fight wars on multiple fronts, but that’s a separate issue.) I think Italy also uses a hybrid public/private system. Switzerland uses a private system that looks like a much less Rube Goldberg version of the ACA. It’s unlikely the political climate to move to any single approach to universal health care access will ever work in the US. I think it’s wasted effort to pretend otherwise. I watched that fight (to expand Medicaid to more poor Americans, which the ACA actually partially accomplished, and Medicare down to younger Americans) basically my whole life and it got us nowhere. That’s why Ted Kennedy fought to make votes for the ACA to his dying breath, despite having fought for Medicare for all much of his life. And the fact that systems wholly or partially based on private insurance *have* worked in a number of countries shows that our hybrid collection of systems *can* be made to work, if we have the political will to make them work.

We are one of the richest nations, when it comes to resources, in the world. Countries with much less have made universal access to healthcare work in many different ways. There’s no excuse for our failure. And I live in Texas, which despite the best efforts of our state GOP politicians to actively sabotage the implementation of the ACA, has seen a 30% reduction in the number of uninsured. (I believe we still lead the nation in both number of uninsured and percentage of population uninsured.) If the ACA has made significant improvements here in the face of stiff political opposition, it can be made to work anywhere. We just need to do it.